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Brain Injury Basics for Families. No Brain Injury is Too Mild to Ignore, Or Too Severe to Lose Hope. What is brain injury?. Brain injury is often defined as either a Traumatic Brain Injury (TBI) OR Acquired Brain Injury (ABI). Traumatic Brain Injury.

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brain injury basics for families

Brain Injury Basics for Families

No Brain Injury is Too Mild to Ignore,

Or Too Severe to Lose Hope

what is brain injury
What is brain injury?

Brain injury is often defined as either a

Traumatic Brain Injury (TBI)

OR

Acquired Brain Injury (ABI)

Family Helpline: 1-800-669-4323

traumatic brain injury
Traumatic Brain Injury

Traumatic Brain Injury (TBI) is an insult to the brain caused by an external force that may produce a diminished or altered state of consciousness.

Causes of TBI can include motor vehicle crashes, falls, sports injuries, assaults, blast injuries.

Family Helpline: 1-800-669-4323

acquired brain injury
Acquired Brain Injury

Acquired Brain Injury (ABI) is an injury to the brain which is not hereditary, congenital or degenerative and has occurred after birth.

Causes of ABI include anoxia, aneurysms, infections to the brain, stroke, brain tumors.

Family Helpline: 1-800-669-4323

the silent epidemic
“The Silent Epidemic”

It is estimated that

5.3 million Americans

live with a disability as a result of brain injury.

Family Helpline: 1-800-669-4323

slide6

TBI in the United States

50,000

Average annual numbers, 1995-2000

Deaths

235,000

Hospitalizations

1,111,000

Emergency Department Visits

?? Receiving Other Medical Care or No Care ??

From the 2004 CDC Report: TBI in the United Sates: ED Visits, Hospitalizations and Deaths

Family Helpline: 1-800-669-4323

traumatic brain injury in new jersey
Traumatic Brain Injury in New Jersey
  • Approximately 8,000 adults and children each year are hospitalized or die as a result of a traumatic brain injury.
  • More than 20,000 people are treated each year in doctor offices or emergency rooms for TBI.*

* Conservatively extrapolated from national data

Family Helpline: 1-800-669-4323

traumatic acquired brain injury in new jersey
Traumatic & Acquired Brain Injury in New Jersey

Although the cause of injury differs, many programs and services for people with brain injury serve both TBI & ABI.

For example, the TBI Medicaid Waiver & TBI Fund both serve individuals with TBI & ABI.

Family Helpline: 1-800-669-4323

changes over the years
Changes Over the Years

30 years ago –

50% of persons with a brain injury died as a result of the injury.

Today –

22% die as a result of injury.

Family Helpline: 1-800-669-4323

functions of the brain
Functions of the Brain

The best way to

understand the affect

of injury to the brain

is to understand the

function of each area

of the brain and

related systems

and

structures.

Family Helpline: 1-800-669-4323

brain stem
Brain Stem

The brain stem,

located at the base of the skull,

is responsible for life-sustaining functions such as regulation of blood pressure, heart rate, breathing and body temperature.

Damage to the brain stem could result in an altered state of consciousness, such as coma.

Family Helpline: 1-800-669-4323

cerebellum
Cerebellum

The cerebellum,

located behind the brain stem,

is responsible for muscle coordination and balance.

Family Helpline: 1-800-669-4323

occipital lobe
Occipital Lobe

The occipital lobes,

located at the back of your brain,

is the visual processing center in the brain.

Damage to these areas may result in neurological visual impairment.

Family Helpline: 1-800-669-4323

temporal lobes
Temporal Lobes

The temporal lobes

lie at the sides of the brain and are the auditory (hearing) processing system of the brain.

Family Helpline: 1-800-669-4323

parietal lobes
Parietal Lobes

The parietal lobes,

located above your occipital lobes,

controls the way your brain responds to information it receives, including visual, auditory and physical information.

For example,

being touched, loud noises, bright lights.

Family Helpline: 1-800-669-4323

frontal lobes
Frontal Lobes

The frontal lobes,

located in the front of your brain,

control the processes of

planning, organization, problem solving, reasoning, emotions and motor skills.

Family Helpline: 1-800-669-4323

severity of injury
Severity of Injury

Sometimes, a brain injury is categorized in one of the following three ways:

  • Mild Brain Injury
  • Moderate Brain Injury
  • Severe Brain Injury.

Family Helpline: 1-800-669-4323

mild brain injury
Mild Brain Injury

Not Just A Bump On The Head!

  • Loss of consciousness does not have to occur—the person may be dazed or confused
  • If loss of consciousness occurs, it is very brief, usually a few seconds or minutes
  • A concussion is considered a mild brain injury
  • Testing or scans of the brain may appear normal

Family Helpline: 1-800-669-4323

moderate brain injury
Moderate Brain Injury
  • A loss of consciousness lasts from a few minutes to a few hours
  • Confusion lasts from days to weeks
  • Physical, cognitive, and/or behavioral impairments last for months or are permanent.

Family Helpline: 1-800-669-4323

severe brain injury
Severe Brain Injury
  • Severe brain injury occurs when a prolonged unconscious state or coma lasts days, weeks, or months.
  • Persons who sustain a severe brain injury can make significant improvements, but are often left with permanent physical, cognitive, or behavioral impairments.

Family Helpline: 1-800-669-4323

severity of injury21
Severity of Injury

Severity of injury does not guarantee outcome.

Persons who sustain a mild brain injury may have ongoing difficulties for years to come and persons with a severe brain injury may make marked improvements over time.

Every brain injury is unique.

Family Helpline: 1-800-669-4323

brain injury families
Brain Injury & Families

Just as each brain injury is unique, brain injury will affect each family differently.

Brain injury often changes the roles and responsibilities of family members. The change can be so drastic it can be similar to bringing a stranger home from the hospital with you.

Family Helpline: 1-800-669-4323

parental relationships
Parental Relationships

Parents of children, adolescents, and adults

with brain injury may become lifelong

caregivers of their sons and daughters.

Family Helpline: 1-800-669-4323

sibling relationships
Sibling Relationships

Siblings live with the consequences of having a sibling with a disability.

They may receive less attention from parents and may take on a lifelong responsibility of worrying and caregiving.

Family Helpline: 1-800-669-4323

spousal relationships
Spousal Relationships

A spouse’s relationship may shift mildly or drastically from one of partner to one of caregiver.

Family Helpline: 1-800-669-4323

child parent relationships
Child-Parent Relationships

The child of a parent with a brain injury may experience a role reversal.

They may end up caring for their parent early in their lives, and receive less attention from the parent providing caregiving.

Family Helpline: 1-800-669-4323

grief loss for the individual
Grief & Loss for the Individual

Potential loss of identity, self-esteem, self-control, expression/communication, independence, relationships, mobility, vocational/career identity, productivity, income and assets.

Family Helpline: 1-800-669-4323

grief loss for the family
Grief & Loss for the Family

Potential change in relationships, dreams for loved one, responsibilities as caregiver, personal freedom, lifestyle, income and assets.

Family Helpline: 1-800-669-4323

stages of grief
Stages of Grief

There are several stages of grief that are common following a brain injury that both people with brain injury and family members go through.

Family Helpline: 1-800-669-4323

stages of grief30
Stages of Grief
  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Family Helpline: 1-800-669-4323

denial
Denial

After a terrible experience, a person may act as if it did not happen.

“This could not have happened to me.”

“She’ll be her old self again soon.”

Family Helpline: 1-800-669-4323

anger
Anger

Once the person accepts that the event occurred, anger and frustration are the next emotions.

The anger can be directed at doctors, family, friends, God, and even at self.

“The doctor doesn’t know anything.”

“No one is helpful.”

Family Helpline: 1-800-669-4323

bargaining
Bargaining

Trying to make deals.

“I’ll be a perfect person if my son is able to be normal again.”

“I will never do ____ again if you let me return to my old self.”

Family Helpline: 1-800-669-4323

depression
Depression

This is a very difficult and painful stage of recovery for both people with brain injury and family members.

“What’s the use? Nothing will ever be the same again.”

“Why bother with rehab?”

Family Helpline: 1-800-669-4323

acceptance
Acceptance

As time passes, individuals and families can come to accept the changes that have taken place.

Nothing can make life as it was before, but life can be new and worthwhile.

Family Helpline: 1-800-669-4323

living with brain injury
Living With Brain Injury

Brain injury will affect each individual differently, but there are many common consequences.

The following consequences and strategies are offered to help both you and your loved one cope with brain injury.

Family Helpline: 1-800-669-4323

cognitive consequences
Difficulty with...

Memory

Persistence

Decision making

Organization

Planning

Self-perception

Attention

Thinking

Problem solving

Sequencing

Perception

Judgment

Inflexibility

Processing speed

Concentration

Cognitive Consequences

Family Helpline: 1-800-669-4323

physical consequences
Seizures

Muscle spasticity

Fatigue

Headaches

Balance problems

Speech difficulties

Visual difficulties

Hemiparesis (paralysis)

Physical Consequences

Family Helpline: 1-800-669-4323

emotional behavioral consequences
Anxiety

Depression

Mood swings

Impulsivity

Irritability

Social withdrawal

Aggression

Lack of motivation

Egocentric behaviors

Lack of self-awareness

Inappropriate behavior and/or language

Sexual dysfunction

Feelings of loneliness

Emotional/Behavioral Consequences

Family Helpline: 1-800-669-4323

strategies for living with brain injury
Strategies for Living with Brain Injury

One of the most important things family members can do is establish structure, consistency, and repetition in their family members routine.

Family Helpline: 1-800-669-4323

structure consistency repetition
Structure, Consistency & Repetition
  • Establish a schedule.
  • Keep your family member’s environment organized.
  • Utilize calendars, notebooks, wall charts, and visual aids as reminders, but be careful not to overstimulate with too much information.

Family Helpline: 1-800-669-4323

structure consistency repetition42
Structure, Consistency & Repetition
  • Remain consistent in what you do and what your expectations are (for example, always remaining a model of calm behavior during outbursts)
  • Repetition will provide a feeling of safety, and be the key to new learning for your family member.

Family Helpline: 1-800-669-4323

breaking down tasks
Breaking Down Tasks

It is always best to break tasks into steps, whether it be completing paperwork for Social Security Disability or preparing a meal.

Expecting large projects to be completed all at once will be setting your family member and yourself up for failure.

Family Helpline: 1-800-669-4323

minimizing distractions
Minimizing Distractions

Providing as much of a distraction free environment as possible will minimize overstimulation and cognitive overload.

Family Helpline: 1-800-669-4323

anticipating stressful events
Anticipating Stressful Events

Anticipate situations that may be stressful for your family members, and try to avoid or minimize the stress.

For example, large family gatherings could be overwhelming and trips to the store when they are crowded and noisy could be cognitively overwhelming.

Family Helpline: 1-800-669-4323

watch for depression
Watch for Depression

Signs of depression to watch for include:

  • Changes in eating habits
  • Changes in sleeping habits
  • Remarks about the futility of life
  • Dwelling on the past
  • Excessive time spent in non-active ways like watching too much television

Family Helpline: 1-800-669-4323

behavioral challenges
Behavioral Challenges

An estimated 90% of all people who are severely disabled by a brain injury may experience some related emotional, behavioral or psychiatric problems.

40% of these individuals still have behavioral issues 5 years after the injury.*

*Brain Injury Association of America

Family Helpline: 1-800-669-4323

behavioral challenges48
Behavioral Challenges

Individuals with milder brain injuries can also

experience behavioral challenges, including

mood changes, irritability and fatigue, which

might be more difficult to identify as being

related to the brain injury.

Family Helpline: 1-800-669-4323

behavioral challenges49
Behavioral Challenges

Behavioral challenges can range from mild

personality changes to persistent difficulty

controlling emotions, lack of inhibition,

managing one’s behavior, and even violent

outbursts.

Family Helpline: 1-800-669-4323

behavioral challenges50
Behavioral Challenges

Behavioral problems can cause:

  • Marital discord
  • Problems with social relationships
  • Family difficulties
  • School or workplace problems

And should never be ignored

Family Helpline: 1-800-669-4323

behavioral challenges51
Behavioral Challenges

There are professionals who can assist with

behavioral problems, including:

  • Neuropsychologists: expertise in assessing the relationships between the brain, behavior and cognition
  • Neuropsychiatrists: can prescribe medications that affect mood, thinking and behavior

Family Helpline: 1-800-669-4323

behavioral challenges tips for families
Behavioral Challenges: Tips for Families
  • Identify stress relievers (taking deep breaths, removing the person from the aggravating environment)
  • Learn to recognize when behaviors will occur (when someone is tired, ill, overwhelmed)

Family Helpline: 1-800-669-4323

behavioral challenges tips for families53
Behavioral Challenges: Tips for Families
  • Identify specific triggers or events (changes in routine, dealing with difficult tasks or people)
  • Identify triggers that your family member is becoming upset (facial expressions, body language)

Family Helpline: 1-800-669-4323

behavioral challenges tips for families54
Behavioral Challenges: Tips for Families
  • Identify a plan for when behaviors happen – having a plan will help to ease your stress, as well as your family member’s stress
  • Know when to seek the help of a professional – you don’t have to do it all yourself

Family Helpline: 1-800-669-4323

behavioral challenges things to remember
Behavioral Challenges: Things to Remember
  • Remain involved in activities to avoid social isolation
  • Allow for independence
  • Coach, encourage and reinforce positive behavior
  • Understand the person may be doing their best to control the behavior

Family Helpline: 1-800-669-4323

support systems
Support Systems

Develop a support system for your family member, and avoid social isolation.

This could include family, friends, support groups, a mentor, a local church group, social and recreational groups in the community, your local Independent Living Center.

Family Helpline: 1-800-669-4323

getting involved
Getting Involved

Daily activities like returning to work, volunteering, taking a class, and participating in community activities will not only provide a structured routine, but will also increase your family member’s self-esteem and avoid social isolation.

Family Helpline: 1-800-669-4323

independence
Independence

“Family members or caregivers should let the recovering TBI survivor burn dinner every night if necessary but step in if the house is burning down.” – Claudia Osborn

Be cautious that caregiving allows for the opportunity to be independent and make mistakes.

Family Helpline: 1-800-669-4323

things to remember
Things to Remember

Every individual is different, and every

injury is unique.

  • Get to know your family member’s abilities, not just their limitations.
  • Listen to your family member.
  • Treat them in an age appropriate manner.

Family Helpline: 1-800-669-4323

things to remember60
Things to Remember

Everyone needs to have control over their own life.

Without such control, dissatisfaction,

frustration, resentment and depression are likely to occur.

Family Helpline: 1-800-669-4323

tips for caregivers
Tips for Caregivers

Take care of yourself, you will need to sleep and eat to maintain your strength and well-being.

Family Helpline: 1-800-669-4323

tips for caregivers62
Tips for Caregivers

Delegate responsibilities like household chores, staying with your loved one, running errands.

Friends and family often want to help, but don’t know what to do.

Family Helpline: 1-800-669-4323

emotional support
Emotional Support

Make sure you have someone to express your emotions to, accompany you to appointments, have fun with.

You do not always have to be strong and you can accept help. Utilize friends, family, advocates to support you and your loved one.

Family Helpline: 1-800-669-4323

become an advocate
Become an Advocate

Learn about brain injury, question the rehabilitation team, be involved, obtain articles, books, and videos to help you learn.

You will often have to educate those around you about brain injury. Being an advocate and asking for help will ease this burden.

Family Helpline: 1-800-669-4323

brain injury association of new jersey
Brain Injury Association of New Jersey

Founded in 1981 by family members and friends of persons with brain injury, the Brain Injury Association of New Jersey is a statewide membership organization dedicated to providing education, outreach, prevention, advocacy and support services to all persons affected by brain injury and to the general public.

Family Helpline: 1-800-669-4323

bianj programs resources
BIANJ Programs & Resources

Information & Resources Helpline

1-800-669-4323

732-738-1002

[email protected]

Family Helpline: 1-800-669-4323

bianj programs resources67
BIANJ Programs & Resources

Brain Injury Resource Center

  • Free Publications
  • Articles on brain injury and disability related topics
  • Browse & Borrow Book & Video Library

Family Helpline: 1-800-669-4323

bianj programs resources68
BIANJ Programs & Resources

Support Groups

16 affiliated groups throughout the state for people with brain injury and their families

Family Helpline: 1-800-669-4323

bianj programs resources69
BIANJ Programs & Resources

Mentoring

Matching trained mentors with people with brain injury and family members in need of support

Family Helpline: 1-800-669-4323

bianj programs resources70
BIANJ Programs & Resources

Family Support

For eligible individuals, injured before the age of 22 and registered with the Division of Developmental Disabilities, care coordination services to assist them and their families in finding and obtaining the supports and services they need.

Family Helpline: 1-800-669-4323

bianj programs resources71
BIANJ Programs & Resources

TREK

Together in Recreation, Exploration & Knowledge

A week of summer respite for individuals 16 and older at Camp Ockanickon in Burlington County.

Family Helpline: 1-800-669-4323

bianj programs resources72
BIANJ Programs & Resources

Annual Seminar

A two-day seminar providing people with brain injury, their families, and the professionals working with them education about new brain injury issues and topics, and an opportunity to meet with one another.

Family Helpline: 1-800-669-4323

bianj programs resources73
BIANJ Programs & Resources

Regional Trainings

Every spring, the Association holds full-day regional trainings on brain injury for health & human service workers in the northern, central & southern regions of the state.

Families are encouraged to let the health & human service workers that assist them know about this unique opportunity to learn about brain injury.

Family Helpline: 1-800-669-4323

bianj programs resources74
BIANJ Programs & Resources

Membership

In becoming a member of the Association, families will be kept apprised of important events and issues related to brain injury through our quarterly newsletter, Annual Meeting, and BIANJ event mailings.

Family Helpline: 1-800-669-4323

bianj programs resources75
BIANJ Programs & Resources

Staying in Touch

  • E-News: The Association’s monthly electronic newsletter.
  • Leg-Net: The Association’s e-mail network to learn about important legislative issues.
  • Website: Updated regularly with important news & events.

Family Helpline: 1-800-669-4323

bianj programs resources76
BIANJ Programs & Resources

The Association also works to raise awareness of brain injury and its preventability through a number of additional programs and initiatives.

Family Helpline: 1-800-669-4323

additional resources
Additional Resources

The following are just a few of the resources available.

For further information & resources, contact an Information & Resources Specialist at the Association’s Helpline at

1-800-669-4323.

Family Helpline: 1-800-669-4323

additional resources78
Additional Resources

Traumatic Brain Injury Specialized Care Units

New Jersey Medicaid has authorized some long term care facilities to provide specialized care to certain nursing home residents with exceptional needs, including brain injury.

Pre Admission Screening by Medicaid is required for these programs.

Medicaid: 1-800-356-1561

Family Helpline: 1-800-669-4323

additional resources79
Additional Resources

Division of Disability Services (DDS)

This state office provides information and referral

services to people with disabilities and their

families, who are seeking help locating appropriate

resources in their communities.

The Division also is responsible for overseeing various

Medicaid home-and community-based waiver programs

that are designed to help people with disabilities live as

independently as possible.

1-888-285-3036

Family Helpline: 1-800-669-4323

additional resources80
Additional Resources

Traumatic Brain Injury (TBI) Fund

As a payer of last resort, providing

individuals with the supports and services

they need.

Administered through the Division of Disability Services.

1-888-285-3036

Family Helpline: 1-800-669-4323

additional resources81
Additional Resources

Traumatic Brain Injury (TBI)

Medicaid Waiver

Developed as an alternative to nursing homes for

people with brain injury ages 22-65, with an injury

occurring after an individual’s 21st birthday.

Administered through the Division of Disability Services.

1-888-285-3036

Family Helpline: 1-800-669-4323

additional resources82
Additional Resources

Division of Developmental Disabilities (DDD)

For individuals whose disability manifested before age 22 and resulted in lifelong conditions that affect a person’s ability to live independently, this state agency arranges and coordinates services to eligible state residents.

(609)-292-3742

Family Helpline: 1-800-669-4323

additional resources83
Additional Resources

Additional Medicaid Waivers exist to assist people with disabilities, including:

  • Community Resources for People with Disabilities (CRPD) Waiver
  • Community Care Waiver (CCW)
  • Medicaid Waiver for the Elderly & Disabled to Provide Enhanced Community Options (ECO) Waiver
  • Community Care Program for the Elderly & Disabled (CCPED) Waiver

Family Helpline: 1-800-669-4323

additional resources84
Additional Resources

Division of Vocational Rehabilitation Services (DVRS)

Provides services to individuals of employable age

with disabilities through 18 district offices.

(609)-292-2000

Family Helpline: 1-800-669-4323

additional resources85
Additional Resources

Social Security Disability Insurance (SSDI)

Benefits for individuals who have enough Social Security credits and who have a severe physical or mental impairment.

AND

Supplemental Security Income (SSI)

A Federal program established for the aged and people

with disabilities who have a low income and few assets.

1-800-772-1213

Family Helpline: 1-800-669-4323

additional resources86
Additional Resources

Board of Social Services

County offices that provide services

including food stamps, general assistance,

emergency assistance, Medicaid, and

support services to people with disabilities.

Family Helpline: 1-800-669-4323

additional resources87
Additional Resources

Independent Living Centers

Community-based, consumer driven organizations

for people with disabilities.

Family Helpline: 1-800-669-4323

additional resources88
Additional Resources

County Offices for the Disabled

A clearinghouse for information about

programs and services for people with

disabilities at a local level.

Family Helpline: 1-800-669-4323

additional resources89
Additional Resources

2-1-1

  • An easy-to-remember telephone number that connects callers to the health and human services, community resources and government assistance they need.
  • Available 24/7.
  • Easily accessed by any landline or cell phone.
  • Calls are free and confidential.
  • Multi-lingual/TTY/TTD.
  • Certified Call Specialists make appropriate referrals and monitor outcomes to ensure services are provided.

Family Helpline: 1-800-669-4323

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